Campaigning for better services in Northern Ireland

What’s the issue?

There are around 20,000 people in Northern Ireland living with epilepsy. This means that one person in every 90 people is living with the condition. However, too many people with epilepsy in Northern Ireland are unable to access the health care and support they need.

Epilepsy Action Northern Ireland has heard from people who are having to wait years for an appointment with a specialist.

Many people with epilepsy also do not have access to epilepsy specialist nurses. Nurses can offer much-needed support and advice between appointments. Despite there being an estimated 20,000 people diagnosed with epilepsy, there are currently less than 5 full-time adult epilepsy specialist nurses in the whole of Northern Ireland.

Epilepsy specialist nurses are at the heart of caring for people living with epilepsy. These vital nurses promote good practice and act as a specialist resource. They help in the diagnosis, treatment and care of people with epilepsy. They also manage clinics and offer people counselling, advice and discussion on their condition.

They also work between GP practices and hospitals, developing the knowledge of GPs and practice nurses.

Epilepsy Action Survey

Epilepsy Action Northern Ireland recently surveyed almost 150 people with epilepsy to find out about their experiences of using epilepsy health services.

Feedback revealed that one in three people do not have access to an epilepsy specialist nurse. This includes people who reported having seizures every day and those with other conditions including a learning disability, autism and mental health conditions.

Of those with access to a nurse, more than half do not get to see their nurse often enough. A third reported not seeing their nurse at all since they were first diagnosed.

What we are doing

Epilepsy Action Northern Ireland has been raising concerns about health services in Northern Ireland and pushing for much-needed improvements. The focus of our efforts has been on highlighting unacceptable waiting times for epilepsy appointments and the serious shortage of epilepsy specialist staff.

Epilepsy Action Northern Ireland is calling for more investment into additional resources. We want the relevant agencies to work together to increase the number of epilepsy specialist nurses in Northern Ireland.

In addition we are asking for the creation of an epilepsy register. The proposed register would contain an electronic record of people’s epilepsy. It would be used by clinicians to improve the care people with epilepsy receive.

What next?

While we need urgent action to address some of the most pressing challenges facing people with epilepsy, we also need a long term solution to deliver high quality epilepsy health services to people in Northern Ireland into the future.

As part of this Epilepsy Action Northern Ireland has been engaging with the Review of Neurology Services. The review was commissioned by the Department of Health NI and recognises that current neurology services are falling short and that long term change is needed.

Moving forward we will continue to work with decision makers, healthcare professionals and people affected by epilepsy to improve services and outcomes in Northern Ireland.